A Primer on Autism

"Are they going to take him away from us?"

That was the first thing Jim, my husband, said to me when I told him that the St. Paul Public School District had said that Charlie, our not yet 2-year-old son, had autism, in the winter of 1999. An image of toddler Charlie in a hospital gown, legs curled under him all alone, came into my mind. I shook it away and said "no."

I think that was my first act of autism advocacy. What follows are three different stages that Jim and I have gone through in seeking to do our best by Charlie.

The First Stage: Helping your child means accepting your child

After getting a child diagnosed, a parent has to figure out what to do. You're instantly faced with a myriad of therapies, services, treatments, interventions, some of which will "maybe help a little," others of which -- such as alternative and biomedical treatments whose efficacy has yet to be scientifically proven -- promise "results." What to do -- go with the tried and true, or with treatments that seem more drastic but offer (or say they offer) more drastic progress and even "recovery from autism"?

Since my son was diagnosed, we've tried many, many treatments and therapies, but educational approaches have remained the cornerstone. As my son has gotten older, we've gradually stopped using any biomedical treatments, and take heart more and more in Charlie just being Charlie. Indeed, I've become wary of any autism treatment that suggests quick and miraculous results over teaching by instructors who've taken the time to get to know my son and his particular learning style and communication, and his different responses to sensory stimuli.

Of course it's difficult, and simply scary, for a parent to hear that their young child has a lifelong disability. And yet, acceptance -- that your child is autistic -- is a first and necessary step in truly helping your child. Autism is a lifelong disability and while the idea of "curing a child from autism" may seem attractive, it's not only an unrealistic notion; it can preoccupy you from focusing on what your child needs here and how. Truly accepting that your child is and will always be different, and what this means for his or her life and yours, can be a lot tougher than talking about heroically "fighting autism." But acceptance doesn't mean being passive: acceptance is the beginning of hope.

The Second Stage: Going out into the world with your child

While a parent may have figured out what kind of teaching and therapies their child needs at home and in school, there's still the rest of the world to deal with. Grocery stores, shopping malls, libraries, houses of worship, movie theaters, restaurants: Overwhelmed by anything from sensory overload -- noise, smells, sights -- it may be all that an autistic child can do to keep his head down and get through the labyrinthine aisles of the modern American supermarket. Just in the past year, two instances of autistic children being excluded from public settings -- a church in Minnesota and an airplane getting ready to take off -- highlighted these difficulties.

There's no limit, or should be no limit, to where an autistic child can go. It may be necessary to gradually introduce a child to a new setting and teaching methods and books are available to help a child with this. Regardless, when out in public with a child who others perceive to be "misbehaving," a parent learns a form of advocacy, as they learn to ignore stares or angry looks, respond to rude comments in a reasonable and thoughtful manner, and discover that they too are marked as "different."

For parents of autistic kids, advocacy doesn't have to mean something big and splashy that gets heard about in a national forum. Just going out can be an act of activism. Doing so says to the world that there are autistic persons here, and maybe they act a little (or a lot) "different," but there's a place on earth for all of us.

The Third Stage: Making a place for autism in the community

Advocacy for the parent of an autistic child does begin at home, but parents also need to reach out the bigger community. But is fundraising by joining an autism walk in and of itself an act of autism advocacy?

Some more ways that you as a parent can make a difference for your child's day to day life and for that of other autistic individuals include:

• . Becoming active in the PTA and other organizations at your child's school.
• Attending Board of Education meetings so that your local community knows that there are autistic students and that their educational needs must be met.
• Talking to the directors of your state's autism orgaizations.
• Contacting local and state elected officials about legislation and initiatives. Responding to public calls for information for government level funding of research.
• Blogging and writing about autism in a public forum (that's how I really got my start in learning to advocate for my son).

At every level, it's essential to communicate a positive and hopeful view of autism, while emphasizing the difficulties faced by autistic individuals and by those who take care of them.

Advocacy Begins at Home

Recently Jim and I found ourselves back at square one in advocating for Charlie. Charlie started middle school in September of 2008 and the transition was even tougher than we had thought it would be. In October an ABA consultant to our school district told us that a "temporary residential placement" might be "something to think about" for Charlie. Jim and I were speechless. Charlie thrives precisely by being part of society, by being included among his peers: This is an issue of social justice and of ensuring that Charlie's rights are acknowledged and respected. Jim and I reiterated these points strongly in a hastily called meeting with our school district and have since worked closely with Charlie's teacher and therapists to ensure that he is taught in ways tailored to his individual learning needs.

I don't know what will happen to Charlie ultimately, as far as what and where he'll be learning and, as he gets older, where he'll be living and what he'll be doing. But I do know that Jim and I will always emphasize that, while life raising Charlie is not easy, we know that our life has been better because of him. Charlie's story illustrates why we need to focus on how we can best help autistic individuals here, now and today, by focusing research on implementing services, supports and education, and on figuring out how to best train staff and set up policies and protocols to ensure that the needs of autistic persons are appropriately addressed in ways that affirm their dignity and quality of life.

Autism advocacy starts with autistic persons and understanding what their needs are, and why those who are not autistic need them; how we all need each other, and how we need to exist, to work and live, together in the community.